About the Director
Karen L. Parker currently serves as Director of the Sexual & Gender Minority Research Office (SGMRO) at the National Institutes of Health (NIH). Dr. Parker was instrumental in the formation of the office in the fall of 2015 and was appointed Director in June 2016. In her role as Director, Dr. Parker is co-chair of the trans-NIH Sexual and Gender Minority Research Coordinating Committee (RCC), a committee on which she has served since its inception in 2011, and co-chair of the NIH SGM Research Working Group of the Council of Councils. Dr. Parker is also a member of the NIH Anti-Harassment Steering Committee and serves as the co-chair of the NIH Office of the Director Equity Council. Additionally, she sits as an ad-hoc member on the Advisory Committee to the NIH Director Working Group on Diversity.
Dr. Parker is involved in several SGM-related initiatives beyond NIH. She serves as co-chair of the Measuring Sexual Orientation and Gender Identity (SOGI) Research Group, an entity of the Federal Committee on Statistical Methodology, as well as an Executive Director of the Department of Health and Human Services LGBTQI+ Coordinating Committee. In 2021, Dr. Parker received the LGBTQ Health Achievement Award from GLMA: Health Professionals Advancing LGBTQ Equality, for her contributions towards advancing the field of SGM health and health equity for SGM communities.
Dr. Parker began her NIH career in 2001 as a Presidential Management Fellow at the National Cancer Institute (NCI). She spent several years at NCI, serving in various roles in the Office of the Director. Dr. Parker received her Bachelor of Arts in English from Indiana University and her Master of Social Work from the University of Michigan, where she studied community organization, social policy, and evaluation. She subsequently completed her Ph.D. at the University of Maryland, School of Social Work.
Director's Voice Blog
June 30, 2023: Closing on Pride Month, Release of the FY 2022 SGMRO Annual Report, and Interview with the Founder of 500 Queer Scientists!
Pride Month is a time to reflect on the shared hardships faced by LGBTQI+ people, celebrate their successes, raise visibility about the lived experiences of these communities, and take inventory of the work that has been accomplished and the work that remains towards equality.
For SGMRO, Pride Month is also a time for us to celebrate the progress we have made at NIH and across the broader Federal landscape toward advancing SGM health research and creating a more inclusive world for LGBTQI+ communities. This year, we commemorated Pride by launching a few new resources, including our SGM Measurement & Data website and the Culturally Competent Gender-Related Communications (C3) training. Additionally, we are releasing the latest SGMRO Annual Report, which highlights SGM-related research advances and research-related activities at the NIH for Fiscal Year 2022. I encourage you all to peruse the Annual Report to see the progress we’ve made as an agency.
As Pride Month draws to a close this year, I wanted to be intentional about my Director’s Voice blog post. While SGMRO’s successes and work are all worthy of recognition, I think it is also important that we take the time to highlight queer work and to uplift queer scientists who are changing the culture of STEM. For that reason, I interviewed Dr. Lauren A. Esposito who is the Curator of Arachnology at the California Academy of Sciences and the Founder of 500 Queer Scientists, a web visibility campaign for LGBTQI+ people and their allies working in STEM and STEM-supporting jobs with over 1,840 stories and counting.
Dr. Karen Parker: Tell us a little more about 500 Queer Scientists. What is it, what is its main mission or goal, and how did it all begin?
Dr. Esposito: 500 Queer Scientists is a visibility campaign that was launched in 2018. It is a campaign for LGBTQ+ people and their allies working in STEM and STEM-supporting/allied jobs, and is fueled by individual, self-submitted bios and stories intended to boost the recognition and awareness of queer scientists. Our goals are to ensure the next STEM generation has LGBTQ+ role models, help the current generation recognize they’re not alone, and create opportunities for community connections and greater visibility within STEM.
Dr. Parker: What inspired you to start 500 Queer Scientists?
Dr. Esposito: Feeling alone. After over a decade in post-graduate STEM educational and professional spaces, I had never worked in a lab with another queer person, I had never had an out queer professor, and I had never met another out queer person within my own scientific discipline. I was the first openly queer Principal Investigator in the history of my institution, which also happens to be the oldest scientific institution west of the Mississippi, and is located in arguably the most LGBTQ-friendly city in America (San Francisco). This is not because LGBTQ+ people didn’t exist in any of those spaces, it's because STEM spaces often feel like a place where you should keep silent about the identities that you hold. I felt like starting the 500QS visibility campaign was one thing that I, as a person in a relative place of privilege, could do for our community.
Dr. Parker: What are some success stories or memorable moments from creating 500 Queer Scientists?
Dr. Esposito: The response to the campaign has been tremendously positive. In the years since our June 4, 2018, launch, we’ve gathered more than 1800 stories of LGBTQ+ STEM heroes from dozen countries, representing a hugely diverse range of STEM fields: astroparticle physics, neuroscience, molecular genetics, computational biology, organometallic chemistry, extragalactic astronomy, mathematics, conservation biology, forensic anthropology, glaciology, paleoceanography, biomedical engineering, just to name a few. Even more important has been the impact of the campaign on the community itself! People who didn’t know any other LGBTQ+ colleagues are making new connections in their field (or even at their own institutions), we’ve seen non-stop posts and DMs on our social accounts from people expressing how happy they are to see LGBTQ+ scientists, and our website which hosts all of the contributed stories receives over 10k visitors a month. The campaign has also been covered in a wide range of news outlets from mainstream (i.e. Them) to scientific (Science, Nature) bringing greater visibility to this incredible community.
Dr. Parker: In your own words, why is queer representation and visibility important in STEM?
Dr. Esposito: Representation and visibility matter because everyone deserves to show up to work or school and feel safe, welcome, and included. However, perhaps more compelling for many outside of our community is this: As a global society, we are facing some of the greatest challenges in human history. Science and technology are the key to overcoming those challenges. If science progresses through innovation, then innovation comes from ideas and novel approaches. But it’s diversity that breeds those ideas. So for us to progress as a society, we need to foster diversity in our STEM communities. And the consequences are dire. There are an estimated 121K LGBTQ+ people missing from the US STEM workforce today. COVID was particularly tough on our community, with LGBTQ+ scientists reporting that they were significantly more likely to have experienced depression during 2020-2021, and have greater intentions of leaving their career in the next 5 years when compared to cis-gendered and heterosexual counterparts.
Dr. Parker: What words of advice would you give to others looking for ways to uplift their communities?
Dr. Esposito: I think so often we feel powerless or like we aren’t the right person to help make a change. Maybe that’s because of the self-doubt that STEM imbues in so many ways, or maybe that's because of an authentic lack of experience as a community organizer or advocate. The truth is that one person can help catalyze change, and in my opinion one of the best ways to do that is through embracing your own authenticity and celebrating your community.
Dr. Parker: What are some challenges in recruiting and retaining queer people in the scientific workforce?
Dr. Esposito: To understand the contributions of gender and sexual minorities in science, technology, engineering and math, one need not look very far. Lynn Conway, a transgender woman, pioneered the integrated CPU, revolutionizing processing power; Sally Ride, a lesbian, was the first woman astronaut in space; Alan Turing, a gay man, created a machine capable of revealing the limits of computation. However, on the other side of that coin, there is a long history of explicit bias against LGBTQ+ people working in STEM fields—Sally Ride was closeted until after her death, her sexual orientation considered to be “a career wrecker”; the law upheld Lynn Conway’s firing upon her transitioning as a transgender woman; upon discovery of his sexuality, Alan Turing was exiled from the field of mathematics. While society has made strides toward acceptance and legal protections, LGBTQ+ representation in STEM has lagged behind this progress, particularly where identities of women and gender minorities intersect with Black, indigenous and other person of color identities. And while it is experientially clear that LGBTQ+ representation in STEM is extremely low, demographic data are not very clear. U.S. STEM census surveys don't currently include sexual orientation & gender identity questions, so policymakers, federal agencies, & universities can't understand or address LGBTQ disparities in STEM education & the workforce. The major issues faced by sexual/gender minority STEM professionals, include a heterosexist climate that reinforces gender stereotypes in work environments, a culture that strongly encourages people to remain closeted at work, and a general lack of awareness about LGBTQ+ issues among STEM professionals. Because heteronormative assumptions frequently silence conversations about gender and sexuality in STEM workplaces, progress toward equality and inclusion (and therefore recruitment and retention) has been slow to advance.
Dr. Parker What is one piece of wisdom or hope that you would like to share with every queer scientist?
Dr. Esposito: You belong here.
Thank you Dr. Esposito for this interview and your insightful responses!
March 31, 2023: Transgender Day of Visibility
Today, in honor of Transgender Day of Visibility, I am proud to share some of the recent activities and exciting advances underway at NIH in support of transgender and gender-diverse communities. Though we know that there is much work left to be done to create a more inclusive world for transgender and gender diverse communities, I think it’s worth taking the time to recognize, celebrate, and elevate the accomplishments we’ve made toward achieving this goal.
On March 27, the National Institutes of Health held a workshop on Expanding the Evidence Base in Gender-Affirming Care for Transgender and Gender Diverse Populations. The workshop brought together researchers, advocates, clinicians, and members of the community to share what is known about clinical guidelines, review recent scientific findings, and identify crucial knowledge gaps and research opportunities for studies on transgender health and gender-affirming care across the life course. A Request for Information and Listening Sessions were held to inform the workshop. The virtual workshop was videocast for public viewing, and Admiral Rachel Levine provided welcoming remarks via a pre-recorded video. Research opportunities discussed included but were not limited to the following: investigation of the impact of gender affirmation of any kind (e.g., psychosocial, legal, medical, surgical) on mental health outcomes across a range of interventions (i.e., clinical, community, structural) and outcomes (e.g., mental health care utilization, wellbeing, distress, diagnoses, suicidality); research on longitudinal physical health and related outcomes of any gender affirmation (e.g., social, legal, medical, surgical); exploration of care coordination models for serving transgender and gender diverse patients, particularly about gender-affirming care, integrated care (e.g., gender-affirming care and cancer screenings), and different care modalities (e.g., telehealth); and studies on ethical practice frameworks in gender-affirming care medical decision making, patient autonomy, and patient-centered care. A report highlighting identified research opportunities will be posted to the Sexual & Gender Minority Research Office (SGMRO) website in the coming months.
I am also so excited to announce that SGMRO and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) have developed and will be releasing the Culturally Competent Gender-Related Communications (C3) training resource! This video resource concluded production in March and will be released sometime in Spring of 2023. We hope that it will be a useful tool to help enhance gender-related communications in both academic and other professional settings. The C3 resource seeks to develop competence and sensitivity toward gender-related issues and language in both everyday interactions and other types of communication among NIH staff and the extramural community. Stay tuned for the release of this resource, which will be shared on our website. We hope that you will share the video with your colleagues.
Finally, I am thrilled to share how our office has been working on improving the scope of data collection as it pertains to sex, gender, and sexual orientation. SGMRO contributed to the recently released (January 24, 2023), Federal Evidence Agenda for LGBTQI+ Equity. This is a roadmap that federal agencies will use to collect the data they need to improve the lives of LGBTQI+ Americans. The recently published Recommendations on the Best Practices for Collection of Sexual Orientation and Gender Identity Data on Federal Statistical Surveys from the Office of Management and Budget pairs with both the Federal Evidence Agenda as well as the 2022 NASEM Report on Measuring Sex, Gender Identity, and Sexual Orientation. These two reports will inevitably help to propagate the field of SGM measurement and move sexual orientation, gender identity, and sex characteristics (SOGISC) data collection to new heights.
I am so proud of the work being done in the SGMRO, NIH, and throughout federal spaces to improve the lives of transgender and gender-diverse people. At NIH, we will continue to advance our knowledge and to identify research opportunities that are inclusive of SGM populations. We remain committed to ensuring that the voices of all SGM people, including transgender and gender-diverse communities, continue to be represented and included in our work. Happy Transgender Day of Visibility!
October 26, 2022: Intersex Awareness Day
October 26th is Intersex Awareness Day, a day to raise visibility for and to highlight the human rights issues of intersex people and individuals with variations in sex characteristics (also known medically as differences in sex development/DSD). Research demonstrates that these populations encounter unique difficulties with and barriers to accessing culturally competent and affirming health care, similar to other SGM populations. Here at the NIH, the Sexual & Gender Minority Research Office, along with other agency partners, has worked to highlight the needs and ensure the representation of these communities in research activities and related initiatives across the agency.
We are proud to say that our efforts are yielding advances in this scientific area. SGMRO annually releases snapshots to provide additional analyses of the overall NIH SGM Research grants portfolio specific to certain SGM subpopulations, including DSD and intersex populations. In honor of Intersex Awareness Day, we are pleased to announce the release of the FY 2020 DSD and Intersex Research Portfolio Snapshot, which offers a more detailed look into the work that is being funded across NIH within this space.
Our efforts have spanned not only across this agency but also beyond to the broader Department of Human and Health Services (HHS). As an Executive Director for the HHS LGBTQI+ Coordinating Committee, I am fortunate to have participated in HHS-led listening sessions with intersex researchers, advocates, and community members. These sessions occurred in follow-up to Executive Order 14075, Advancing Equity for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals, signed by President Biden on June 15, 2022. The Executive Order directed the Department to issue a report on best practices for advancing health equity for intersex individuals. These listening sessions and the subsequent release of the NIH Request for Information (RFI) will inform and shape this report on intersex health. The report, due in the Summer of 2023, will highlight unique health needs and challenges for intersex individuals, while also identifying research gaps and opportunities. It is my hope that this report will bring greater visibility across the Department to the needs of these communities and will spur additional research focused on the health of intersex people and individuals with variations in sex characteristics.
Happy Intersex Awareness Day!
June 28, 2022: Wrapping up Pride Month 2022 & Announcing the Release of the Annual Report and Portfolio Analysis
Every year, the NIH Sexual & Gender Minority Research Office recognizes Pride Month, which is a time to commemorate the Stonewall Riots, celebrate the courage and resilience it takes to live authentically as one’s true self, and acknowledge the work that remains in bringing about true equality for LGBTQI+ people everywhere. This year, as we wrap up Pride 2022, I am excited to share some of the numerous accomplishments that our office has achieved towards advancing LGBTQI+ health equity over the past year.
Firstly, we are acutely aware that many gaps in our understanding of sexual and gender minority health persist due to inadequate, insufficient, and inaccurate data collection of sex, gender identity, and sexual orientation. Moreover, these gaps extend beyond health research, as data collection issues limit our understanding of LGBTQI+ experiences within the health research workforce, clinical settings, and more. To address this gap, NIH commissioned a report from the National Academies of Sciences, Engineering, and Medicine (NASEM) to empirically review the current evidence base on the measurement of these constructs, provide recommendations for the use of specific measures, and highlight future directions for measurement-related research in this space. This effort was led by the SGMRO and co-funded by 18 other NIH components.
I am pleased to announce that NASEM published this Consensus Study Panel Report on Measuring Sex, Gender Identity, and Sexual Orientation earlier this year, and our office has been hard at work in disseminating and implementing its recommendations to and with our partners across the Federal landscape and broader community. The recommendations highlight, in part, the critical need for continued and ongoing research and testing of SGM measurement questions and response categories. It is our hope that this report will serve as the cornerstone and a roadmap for expanding and enhancing SOGI data collection while also propagating measurement-related science forward.
Another thing that I’m proud to share is that our office has been working on the development of a training resource for agency staff titled Culturally Competent Gender-related Communications. Here at SGMRO, one of our priorities is to ensure and facilitate inclusive workplaces for all people, especially LGBTQI+ communities that have been shown to experience disproportionately higher rates of discrimination and harassment in the workplace in comparison to cisgender and heterosexual people. This resource, which is in the final stages of development, will seek to enhance understanding of sex, gender identity, and sexual orientation while providing strategies to be more respectful and affirming when using gender-related language.
Finally, I am pleased to announce the release of the FY 2021 SGMRO Annual Report and the FY 2020 Sexual & Gender Minority Research Portfolio Analysis. The Annual Report presents a representative sample of research-related activities and initiatives from across the NIH for FY 2021. It illustrates the breadth of the SGM-relevant work being conducted across the Institutes, Centers, and Offices. The Portfolio Analysis describes SGM-related research that the NIH funded in FY 2020. The Portfolio Analysis includes analyses by specific population variables, race and ethnicity, age, research methods, type of study, and other relevant variables. Of note, the FY 2020 Portfolio Analysis revealed that the agency witnessed a 66.1% increase in the number of funded SGM-related research projects since FY 2015! We hope these reports will lead to fresh insights and further analyses that will help identify NIH funding trends and areas of opportunity in future SGM health research and related initiatives for the following year.
While we have much to be proud of, it does feel like with each new milestone that we reach, I become more aware of how much further we must go before we can achieve true LGBTQI+ health equity and equality. But, in moments of reflection like this, when I think about where we started as an office to where we are now, I am filled with optimism and determination for the future. I am confident that the staff, scholars, researchers, and the broader LGBTQI+ community dedicated to this work will continue pushing the field of SGM health forward. I cannot wait to see where we will arrive in the years ahead.
I hope you had a wonderful Pride Month!
March 31, 2022: Transgender Day of Visibility
Today, March 31, is Transgender Day of Visibility (TDoV)! This annual observance is celebrated around the world to uplift and enhance the visibility of transgender and gender nonconforming (TGNC) people and their contributions to society. It is a day to also recognize the significant hardships these communities have faced and continue to face today, including pervasive discrimination and inequity across many domains of life. Moreover, it is a time to celebrate the courage, strength, and resilience of transgender and gender diverse communities to live openly and authentically despite it all.
Here at the Sexual & Gender Minority Research Office, I know that each one of us counts ourselves fortunate to be given the opportunity to serve these communities. We are acutely aware that much work remains in creating a healthier, safer, fairer, and more inclusive world for all sexual and gender minority (SGM) communities, including TGNC people. It is a driving force in everything we do. However, while it is important to never lose sight of our end goal, I believe it is just as important to celebrate the progress we make along the way. For that reason, in the spirit of TDoV, I wanted to take a moment to highlight some of our recent work and accomplishments in support of transgender and gender diverse communities.
To begin, NIH has been working hard to address the dearth of health research specific to TGNC and all SGM populations. The agency’s efforts to expand the NIH Grants Portfolio related to SGM health have resulted in a 66.8% increase in the number of funded SGM-related projects and an incredible 150.6% increase in the number of non-HIV/AIDS funded SGM-related projects from Fiscal Year (FY) 2015 to 2020! This progress is tracked annually through a portfolio analysis that is conducted and published by SGMRO. Additionally, beginning with the FY 2018 SGM Portfolio Analysis, the office began to release snapshots that offered a more nuanced look into the SGM Grants Portfolio for certain subpopulations, including transgender people. The FY 2019 Transgender Research Portfolio Snapshot revealed that transgender-related projects constituted approximately 22.6% of the overall SGM portfolio for that year. I hope to see continued unprecedented growth in the NIH SGM Grants Portfolio in the coming years, along with a deeper understanding of TGNC health.
Secondly, from the limited research that exists, we know that violence disproportionately affects SGM populations, and that fatal violence disproportionately affects TGNC communities, especially those of color. More research is needed to assess, address, and mitigate the perpetration and occurrence of violence among SGM people. To help address this gap, SGMRO organized a multi-phase, months-long Scientific Workshop on Violence & Related Health Outcomes in Sexual & Gender Minority Communities that convened experts and other key stakeholders to identify and prioritize key research opportunities within this field. I am confident that the findings from our workshop will be useful in shaping the next wave of research on violence among TGNC people.
Lastly, given that transgender and gender diverse communities are more likely to report harassment, discrimination, and lack of support in the workplace, our agency has been working on new initiatives to help create a more inclusive and gender-affirming workplace. Just recently, SGMRO and the NIH Office of Equity, Diversity, and Inclusion released a gender pronouns resource, which outlines the significance of pronouns and their proper usage, legal rights surrounding pronouns, mistakes to avoid, and other useful information. I am also excited to share that over the past year, SGMRO has been leading the development of a training resource for staff on culturally competent gender-related communications. This resource will educate staff on the use of gender-affirming language and communications tactics for a variety of situational contexts.
Looking back, I am proud of our accomplishments, and I know that this is just the tip of the iceberg! As we look forward, SGMRO and NIH remain committed to ensuring that the voices of TGNC and all SGM communities continue to be represented, included, and heard in our work. While it could be daunting to think of how much work remains, I find myself feeling very optimistic and excited to witness the progress we will undoubtedly make together.
November 24, 2021: A Message of Gratitude from the SGMRO Director
As we approach Thanksgiving Day, I look back with pride and gratitude for all that the Sexual & Gender Minority Research Office has achieved. I fully recognize that our numerous achievements would not be possible without the support and hard work of so many. I’d like to take the opportunity today to express my thanks.
First, it is my profound belief that health research and related work should involve the communities involved at every single step of the process. For that reason, I am so thankful for the overwhelming support from the sexual and gender minority (SGM) communities that we serve. From the very beginning, you have embraced us and provided the office with the guidance, feedback, and encouragement necessary to help advance our mission.
Secondly, there can be no innovation and growth without the hard work and dedication of the scientific workforce committed to the field of SGM health research. Over the past six years, the agency has witnessed unprecedented growth in its funding of SGM-related research. From FY 2015 to FY 2020, NIH saw a 66.8% increase in the number of funded SGM-related research projects, and in FY 2020 the number of non-HIV/AIDS SGM-related research projects reached its highest level ever. In addition, SGMRO’s SGM Administrative Supplements program has funded 76 supplements on a variety of SGM health topics, providing over $7 million in funding since FY 2016. As many of you know, NIH cannot fund research for which we do not receive applications. Therefore, I am so grateful for the community of investigators and scientific staff who work tirelessly to expand and push the boundaries of SGM health research with the ultimate goal of achieving health equity for SGM people.
Next, the progress we have made as an agency would also not be possible without the team at SGMRO, whom I am so privileged and honored to lead. Since its inception, the SGMRO team has more than quadrupled in size, going from a staff of two to a staff of nine. Our team is constantly brainstorming, developing, and implementing initiatives and programs to advance SGM health. I am so thankful for the commitment and passion each of my staff brings to our work; I cannot fathom a better team to lead. My thanks to Irene, Ryan, Christopher, Shyam, Sara, Anthony, Nicole, and Christina.
In that line, I also cannot begin to overstate my gratitude and appreciation for senior NIH leadership, who from the very start, have been unwavering in their support of the office and its work. I count myself fortunate to work for an agency whose leaders continually advocate for the inclusion and representation of SGM people at all levels of the biomedical research enterprise. My thanks to Francis Collins, Larry Tabak, Jim Anderson, and Robin Kawazoe. I’d also like to thank senior leaders of the many Institutes, Centers, and Offices at NIH who also stand in support of this work.
Additionally, I would be amiss if I did not acknowledge the incredible NIH SGM Research Coordinating Committee (SGM RCC). Before there was an SGMRO, the SGM RCC laid the foundation for the first NIH-wide SGM Strategic Plan and the subsequent creation of the office. To this day, the SGM RCC continues to be an invaluable partner in enhancing and expanding the visibility of SGM-related work across the many Institutes, Centers, and Offices at NIH. Thank you to all the past and current SGM RCC members for your significant contributions.
Lastly, I must give thanks to all the pioneers, advocates, changemakers, and others that came before and paved the way. Without their perseverance and sacrifice, none of our progress and achievements would be possible.
From the bottom of my heart, thank you. I hope you all have a wonderful holiday season. I cannot wait to see what lies in store in the New Year!
Workforce diversity and inclusion efforts must support and include all underrepresented groups, including sexual and gender minority (SGM) scientists. Dr. Bernard’s interview with Dr. Parker covers the vital work of the SGMRO and NIH-wide initiatives that are furthering the SGMRO’s mission.
Dr. Bernard: Tell me about the mission and activities of the SGMRO.
Dr. Parker: A vital part of the SGMRO’s mission is to direct the development and implementation of the NIH-wide Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities, which serves as a roadmap to enhance the agency’s SGM-related research and data collection efforts, while also supporting a diverse scientific workforce devoted to improving our understanding of the health of SGM communities. The office strengthens and coordinates SGM research and related activities by working directly with the NIH Institutes, Centers, and Offices (ICOs).
The SGMRO has made significant strides in advancing SGM health research and related initiatives at the NIH. A few achievements include:
- Increasing the number of funded research projects related to SGM health by 23.0 percent between 2019 and 2020, and by 66.8 percent between 2015 to 2020.
- Implementing the SGM Administrative Supplements Program, which has provided nearly $6.1 million in funding to 64 unique supplements on a range of critical SGM health research topics. Numerous ICOs and the SGMRO have supported this agency-wide initiative.
- Developing and updating a formal and inclusive definition of sexual and gender minorities to enhance the representation of these populations in NIH-supported research and initiatives (NOT-OD-19-139).
- Hosting scientific workshops and gathering public input to identify research opportunities in understudied groups and topics.
The SGMRO encourages support for early-career researchers to foster a more robust SGM health research workforce. The office coordinates regional workshops aimed at trainees and new investigators to better enhance capacity in SGM health research. Additionally, the SGMRO launched a free webinar series in June 2020 to promote NIH-funded SGM health research and a Researcher Spotlight feature that explores career pathways and provides guidance for building a successful career in this field. The office also created a webpage to house useful resources and tools for researchers seeking to conduct SGM-related health research.
Dr. Bernard: Let’s talk about the FY2021–2025 strategic plan the SGMRO is now implementing.
Dr. Parker: The SGMRO led the development of the NIH FY 2021–2025 Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities. In the plan, released in September 2020, you’ll find scientific themes and operational goals and objectives that will enhance understanding of SGM health and health outcomes, augment sexual orientation and gender identity data collection for research and administrative activities, and foster the SGM scientific workforce. The plan will help the SGMRO continue to advocate for the equitable treatment, inclusion, and representation of SGM individuals in the biomedical and research workforce over the next four years.
The SGMRO, together with the NIH-wide Sexual & Gender Minority Research Coordinating Committee (SGM RCC), is responsible for implementing the plan. As we work to implement this new strategic plan, I am excited for the progress we will undoubtedly make across our agency and beyond over the next few years. However, we recognize that there’s still much work to be done in creating a welcoming and inclusive scientific workforce for SGM individuals and in resolving the unique health disparities encountered by the SGM population.
Dr. Bernard: What working groups and committees at the NIH are also advancing knowledge of SGM individuals and research?
Dr. Parker: The first committee I’d like to discuss is the Sexual & Gender Minority Research Coordinating Committee (SGM RCC), an NIH-wide forum for discussing the diverse health research issues of SGM communities. I co-chair the committee and have served on it since its inception in 2011. The SGM RCC is a catalyst for developing additional research and related activities in these areas across the NIH. Each month, the SGM RCC meets to discuss barriers to conducting SGM-related research and provide the support needed to ensure SGM health research remains part of NIH’s research and training programs.
Another critical effort is the NIH Sexual & Gender Minority Research Working Group of the Council of Councils (SGM RWG). This group is primarily composed of extramural experts from the field of SGM health. It is charged with providing scientific expertise and input to the Council on opportunities for NIH-wide research collaborations, strategies for increasing the number of SGM investigators and the number of investigators conducting SGM-relevant research, and several other activities related to SGM health research and representation of SGM individuals in the workforce.
The SGMRO constantly works to ensure the inclusion and integration of SGM voices and perspectives in various steering committees and working groups for NIH-wide initiatives. Some examples include the UNITE Initiative, Advisory Committee to the NIH Director Working Group on Diversity, and the NIH Anti-Harassment and Anti-Racism Steering Committees.
Dr. Bernard: What does a scientific workforce inclusive of SGM individuals look like to you?
Dr. Parker: I envision a workforce where there is mutual respect for one another, equity in opportunity for all, and the capacity for any individual to thrive, regardless of their background. I see a workforce that represents and embraces the full diversity of the human experience and ensures full representation and inclusion of SGM individuals in all equity, diversity, and inclusion efforts.
Dr. Bernard’s Parting Thoughts: I encourage everyone to become familiar with the SGMRO’s work and consider how you can commit to being more inclusive of SGM individuals in your work. I share Dr. Parker’s vision for the scientific workforce, which aligns with that of the COSWD Office. We’re committed to creating cultures of inclusive excellence and sustaining scientific environments that benefit from the full range of talents at the NIH and NIH-funded institutions.
Each year on April 18th, we observe National Transgender HIV Testing Day (NTHTD). NTHTD is an annual event that highlights the importance of routine HIV testing and status awareness as part of our continued focus on HIV prevention and patient-centered care for transgender and gender non-binary individuals.
An estimated 1 million adults in the United States are transgender1. Transgender individuals, particularly transgender women, are at a high risk for HIV infection and disproportionately affected by HIV2. Among transgender women, recent data show that HIV is more common among Black/African American and Hispanic/Latina persons3. In 2018, adult and adolescent transgender individuals made up 2 percent of new HIV diagnoses in the United States and dependent areas, with most of the new HIV diagnoses among individuals ages 25–344. As recommended by the Centers for Disease Control and Prevention (CDC), individuals at increased risk of HIV infection should be tested for HIV at least annually5.
Transgender individuals with HIV may face a broad range of challenges that affect their health outcomes, including socioeconomic factors, stigma, discrimination, social rejection and exclusion, unique barriers to seeking HIV testing, limited transgender-specific data and research, and health care providers who lack knowledge of transgender issues.
To learn more about these challenges and discuss solutions, I invited my colleague Dr. Karen L. Parker to have a conversation. Dr. Parker is an expert in sexual and gender minority (SGM)-related research and Director of the National Institutes of Health (NIH) Sexual and Gender Minority Research Office (SGMRO). Like OAR, SGMRO is a part of the Division of Program Coordination, Planning, and Strategic Initiatives, in the NIH Office of the Director. We covered some critical issues in this discussion:
Dr. Goodenow: What unique or critical concerns do transgender individuals face regarding HIV and AIDS?
Dr. Parker: Transgender individuals encounter unique barriers in accessing health care, which have significant implications for HIV/AIDS prevention, screening, and treatment within this population. Several documented concerns include experiences of trauma, discrimination, and minority stress. These experiences often lead to mistrust, fear, and avoidance of health care systems and providers. Additionally, there are socioeconomic concerns to consider. These populations encounter higher rates of poverty and unemployment, limiting their access to health insurance and/or the ability to pay for care. Transgender individuals are also more likely to engage in risky health behaviors such as substance use (including intravenous/injectable drugs) and unprotected sex, both of which are significant risk factors for HIV transmission.
Dr. Goodenow: What obstacles do transgender individuals face that stand specifically in the way of getting tested for HIV, and how can we address these obstacles through health research?
Dr. Parker: Interventions to mitigate and treat HIV/AIDS for transgender people should take into consideration the barriers to care that I mentioned above. There is also a need for training culturally competent providers to ensure welcoming and affirming clinical environments for transgender patients, which is vital for building trust within the community. A welcoming and affirming clinic will make it more likely that these patients are getting screened routinely and treated adequately to help reduce rates of HIV transmission. Additionally, HIV/AIDS prevention and treatment education, and related dissemination efforts, should be inclusive and representative of transgender people. These interventions should also be informed by health research involving these communities.
Dr. Goodenow: Can you tell us about the variety of NIH programs that are underway to advance our understanding of health disparities that put transgender individuals at a greater risk for HIV/AIDS and other health conditions? I know, for example, that SGMRO conducts Sexual & Gender Minority Health Research Regional Workshops, Listening Sessions, and the SGM Administrative Supplements Program.
Dr. Parker: Those are all great examples of the types of work SGMRO undertakes to help enhance our understanding of the health disparities encountered by transgender individuals and other SGM populations. The SGM Administrative Supplements Program, for example, provides additional funds to current NIH-funded grants to include SGM populations or SGM health-related research questions. Several supplements have been awarded to investigators with HIV/AIDS-related projects to include SGM populations, including transgender people. Additionally, SGMRO co-sponsored the recently released National Academies (NASEM) consensus study report on Understanding the Well Being of LGBTQI+ Populations(link is external). This report, conducted by an expert panel, is an extensive review of the available data and identifies future research needs and recommendations to advance health outcomes for SGMs.
Dr. Goodenow: Are there any other steps that NIH can take to facilitate HIV testing and reduce risk to improve health outcomes for transgender individuals?
Dr. Parker: As we know, research and science inform clinical practice, which leads to better health outcomes. To reduce HIV transmission and improve health outcomes for transgender people, we need to do more work in ensuring health research is inclusive of gender-diverse populations. Currently, research is limited due to inconsistency or lack of sexual orientation and gender identity (SOGI) in data collection, and there are no current guidelines in place to standardize measures. For that reason, SGMRO is proud to announce the launch of another NASEM consensus study to provide recommendations and guidelines for collecting SOGI measures across various domains, including administrative, clinical, and research use. We hope the upcoming consensus study report will better inform policy and programmatic efforts to improve data collection and yield better health outcomes for all SGM communities. This report will also be vital in shaping the next wave of scientific inquiry within this field.
Dr. Goodenow: Thank you, Karen. This discussion has been very productive and will inform OAR’s commitment to advance research to end the HIV pandemic and improve HIV/AIDS health outcomes for all people.
The OAR encourages stakeholders to get involved with efforts to reduce HIV stigma and promote testing and treatment for transgender individuals. To get involved and find tools to use, visit the CDC’s National Transgender HIV Testing Day webpage and Let’s Stop HIV Together Campaign resources for transgender individuals.
(See the original blog post for a full list of cited references)
September 21, 2020: SGM Research Symposium & Release of the NIH FY 2021—2025 SGM Research Strategic Plan:
This month marks the five year anniversary of the NIH Sexual & Gender Minority Research Office (SGMRO). Words cannot begin to express how proud I am to serve as Director and to be witness to all that the Office and NIH have achieved together.
The SGMRO, and NIH as a whole, has made significant and meaningful progress in developing initiatives and expanding research activities to benefit SGM populations. As I look back on the previous five years, I am incredibly pleased by the many accomplishments that we have made. Below are highlights of our progress to date.
- From 2015 to 2019, we saw a 37.2% increase in the number of SGM-related projects funded
- To date, the SGMRO administrative supplement program has funded nearly $6.2 million to 64 investigators that span a broad range of key topics in SGM health.
- In 2016, NIMHD officially designated sexual and gender minorities as a health disparity population for NIH research.
- Sex Assigned at Birth, Sexual Orientation, and Gender Identity measures have been added to the PhenX Toolkit; the All of Us Research Program also routinely collects these data.
- In 2018, the SGMRO established the SGM Research Investigator Awards Program, to recognize early-stage and distinguished investigators for outstanding contributions to the field of SGM health research.
This past week we held our first ever SGM Research Symposium. This event was indeed a testament to all that the agency has accomplished. This day-long celebration of the Office’s five years featured lectures from SGM Administrative Supplement grantees, a presentation about work being conducted in the NIH Intramural Research Program, and career highlights from the 2020 recipients of the NIH SGM Research Investigator Awards.
At the symposium, I was thrilled to announce the release of the NIH FY 2021–2025 Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities. This plan will provide a roadmap for the SGMRO and all NIH Institutes, Centers, and Offices, as we look to expand our work in SGM-related activities.
I am so excited to begin work on implementing this strategic plan and cannot wait to see how we continue to grow as an agency in support of SGM-related initiatives and research activities. My sincere thanks to all the individuals, both within the agency and beyond, who continue to support the work of the SGMRO. In particular, I would like to thank the NIH Sexual and Gender Minority Research Coordinating Committee and the tremendously talented and committed team in the SGMRO, without whom, none of our progress would have been possible.
Here’s to another incredible 5 years!
June 30, 2020: Wrapping up Pride Month & Announcing the Release of the Annual Report and Portfolio Analysis
As Pride Month comes to a close, I’m excited to share with you some of the hard work we have accomplished here at the Sexual & Gender Minority Research Office. Despite the COVID-19 pandemic and disruptions to our normal work arrangements, the SGMRO team has been continuing to work relentlessly to support SGM-related research activities across the agency.
Foremost, I am pleased to announce the release of both the FY 2019 SGMRO Annual Report and the FY 2018 Sexual & Gender Minority Research Portfolio Analysis. The Annual Report presents a representative sample of research-related activities and initiatives from across the NIH for FY 2019 and illustrates the breadth of the SGM-relevant work being conducted across the ICOs. The Portfolio Analysis describes SGM-related research that was funded by the NIH within FY 2018.
This year, the Portfolio Analysis features new analyses based on the curation of the FY 2018 Sexual & Gender Minority (SGM) dataset. It includes population variables, race and ethnicity, age, research methods, type of study, and other research variables. We anticipate that these new variables will lead to fresh insights and further analyses that will help identify trends in current funding, as well as areas of opportunity in future SGM health research funded by the NIH.
This month we also successfully launched the SGMRO Scientific Webinar Series, which seeks to promote research being conducted by NIH-funded investigators in the field of SGM health. The goals of this series are to highlight current and groundbreaking SGM health research and to provide a forum that allows students, postdocs, early-stage investigators, and others to envision a research trajectory in SGM health research. Our inaugural speaker was Brian Mustanski, PhD, Director of the Northwestern Institute for Sexual and Gender Minority Health and Wellbeing and Member of the NIH SGM Research Working Group, who spoke about “Creating Health Equity for Young SGM People.” A recording and transcript of the webinar will be made available on the SGMRO website in the coming weeks.
Finally, I am very excited to share some news regarding a few projects that are still in the works. On September 17, our Office will be hosting the SGMRO Research Symposium & Investigator Awards Program. This symposium will not only commemorate the Office’s 5-year anniversary but will also feature lectures from NIH-funded investigators and awardees on a variety of different topics relating to SGM health.
During this symposium, we will be unveiling the NIH FY 2021 – 2025 Strategic Plan to Advance Research on the Health and Well-being of Sexual & Gender Minorities. This Strategic Plan will build upon the foundation of the previous NIH SGM Research Strategic Plan, presenting scientific themes and operational goals and objectives that aim to enhance the agency’s SGM-related research and data collection efforts, while also supporting a diverse scientific workforce devoted to improving our understanding of the health of SGM communities. The Office has been working on the development of this plan for over a year, using input provided from across the agency and beyond. I believe our efforts have culminated in a plan that will truly enhance and expand SGM-related research activities and initiatives at the agency.
As you can see, it’s been full speed ahead here at the SGMRO! Our office remains committed to fostering the field of SGM health research and ensuring the representation and inclusion of SGM populations in research and other initiatives at the NIH. I cannot wait to see how the next couple of years unfold! Happy Pride Month everyone!
June 5, 2020: Pride Message from the SGMRO Team - SGMRO Stands in Solidarity with the Black Community
It was June of 1969, when the first brick was thrown at the Stonewall Riots by a transgender woman of color, Marsha P. Johnson, in response to police brutality and social injustice. She, along with other queer women of color, led a riot which subsequently grew into a widespread movement seeking to advance the rights and liberties of sexual and gender minorities (SGMs). To reflect on the progress made since the Stonewall Riots, SGM communities continue to celebrate Pride in the month of June.
However, this year, as we enter Pride Month, we do so with heavy hearts. Normally a cause for celebration in SGM communities, this year it is marred by our common anguish and outrage towards the senseless and fatal acts of violence perpetrated against Black individuals in this country. Tensions are reverberating across the nation as we grieve the recent losses of George Floyd, Breonna Taylor, Ahmaud Arbery, and other Black lives.
It is important that we say their names. It is important that we recognize these horrible acts of violence were rooted in prejudice and bias. It is important that we amplify the voices of the Black community, which are too often unheard. It is important that we speak and act out against hate, violence, and racism.
Here at the Sexual & Gender Minority Research Office, we are all too familiar with the injustice, violence, and disparities that SGM communities, especially those of color, have faced and continue to face today. We stand in solidarity with the Black community and renew our commitment to combatting social injustice at every turn. We will continue to advocate for the equitable treatment, inclusion, and representation of oppressed and marginalized populations.
January 6, 2020: New Year's Reflections & the Importance of Pronouns
Going into a new year, it’s important to reflect on the past year to celebrate our successes and contemplate new directions for the future. I am proud to say that 2019 was a pivotal and successful year for the SGMRO. Our staff expanded with the addition of three new staff members, allowing us to greatly augment our capacity. We celebrated and recognized scholars in the field of SGM health, hosted the agency’s first-ever scientific workshop on bisexual health, collaborated to successfully publish an RFA on SGM Measurement, and expanded our presence across the agency through staff participation in numerous working groups and steering committees.
However, while we’ve made significant progress in advocating for SGM health research across the NIH, we still have much work left to do, especially in advocating for equitable and inclusive treatment of SGM colleagues within the agency and beyond. As some of you may remember, results of the NIH Workplace Climate and Harassment Survey indicated that gender minorities (e.g., transgender, genderqueer, and gender nonconforming individuals) report alarming rates of harassment here at the NIH. In my capacity as the co-chair of the OD Anti-Harassment Champions Workgroup, I am a part of an effort seeking to reduce these disparities and eliminate incivility in our workplace altogether.
In that spirit, as we embark on a new year, I am writing today to emphasize the importance of pronouns. Pronouns are not just words; they are a way to convey one’s gender identity. Individuals whose gender identify deviates from binary constructs or expectations of gender may use pronouns other than “he/him” or “she/her.” These include “they,” “them,” “theirs,” and others.
Refusing to use pronouns is a form of harassment, which can create a hostile environment. Learning someone’s pronouns is as simple as learning someone’s name. The experience of being misgendered can be hurtful as it is tantamount to invalidating who a person is at their core. Acknowledging and accurately using a person’s pronouns goes beyond basic courtesy. It creates mutual respect between individuals and an environment that is both gender-affirming and tolerant.
One way that we can help to promote appropriate use of pronouns is to be open about our own pronouns. This may include announcing pronouns at the beginning of meetings, adding pronouns to your email signature, and introducing yourself with your pronouns.
Everyone deserves to work in an environment that is both respectful and affirming of their gender identity. It is my hope that by taking small steps like including pronouns in everyday communications, we can begin to take larger strides in making the NIH a more inclusive agency in 2020 and beyond. We can do better. We must do better.
December 11, 2019: Bisexual Health Research Workshop
Despite the fact that bisexual people (bi/bi+) make up over half of the LGB population in the United States and are considered the largest of the sexual and gender minority (SGM) subgroups, they are woefully and disproportionately underrepresented in SGM health research. Moreover, given that definitions of bisexuality vary considerably across research studies and data on sexual orientation groups are often pooled, distinct health risk profiles and unique health challenges that bisexual individuals face may be distorted. This is alarming, considering a growing body of research also suggests that bisexual individuals face an increased relative risk for adverse mental and physical health outcomes in comparison to other LG and heterosexual counterparts.
In order to advance understanding of bisexual health disparities, the NIH Sexual & Gender Minority Research Office (SGMRO) hosted its first ever scientific workshop on bisexual health research in September 2019. Our office convened a group of researchers with expertise in bisexual health, measurement, and other disciplines to discuss the most recent scientific findings on bi/bi+ health across the life course and to identify crucial knowledge gaps and research opportunities.
I am pleased to say that this day-long workshop culminated in robust discussion and intensive brainstorming sessions that led to identification of research priorities and gaps in bisexual health across four key areas: life course perspective, intersecting populations, key health inequities in bi/bi+ populations, and social determinants of bisexual health. For those of you interested, an archived videocast of the workshop is available for public viewing.
Our office has released a summary document that reflects the content of the discussion among participants at the workshop, as well as topics for further research across each key area. While this document does not represent an official position of the NIH or any other government agency, it is my hope that the opportunities identified will help guide the field of bisexual health research and raise the overall visibility and representation of bisexual people in health research in the years to come.
Click here to see the full Bisexual Health Workshop Summary Document.
October 8, 2019: NIH SGM Research Investigator Awards Program
NIH is proud to recognize two early-stage investigators and one distinguished investigator for their substantial and outstanding research contributions in areas related to SGM health. On September 17, the Sexual & Gender Minority Research Office (SMGRO) hosted the second annual Sexual & Gender Minority (SGM) Research Investigator Awards Program. Drs. Katie Biello and Lindsay Taliaferro received the Early-Stage Investigator Award, and Dr. Karen Fredriksen Goldsen received the Distinguished Investigator Award. For those of your who were unable to attend the event, I encourage you to see the archived videocast of the event to learn more about the important research conducted by our awardees.
The NIH SGM Investigator Awards Program was developed to strengthen the community of researchers and scholars who conduct research relevant to SGM health and well-being, which addresses one of the goal areas of the NIH SGM Strategic Plan for FY 2016 – FY 2020. It is our hope that this awards program not only provides much needed visibility and recognition to researchers in this community, but also propagates SGM health research by attracting and retaining new investigators to this field of study.
We know SGM populations face significant and unique health disparities, and we know that more research needs to be conducted in order to better assess, understand, and address those disparities. To do that, we need to develop and expand the research workforce dedicated to SGM health research, and to ensure that there are resources and support in place for these researchers.
SGMRO remains dedicated to fortifying the community of SGM health researchers and scholars. In addition to the investigator awards program, the office has conducted numerous regional workshops around the country to build networks of SGM researchers, students, fellows, administrators, and the community with the NIH and the SGMRO. Moving forward, as we work on developing the NIH SGM Strategic Plan for FY 2021 – FY 2025, we hope to explore new ways to best support a growing SGM health research workforce.
We plan to release the call for nominations for next year’s SGM Research Investigator Awards Program sometime in early 2020, so stay tuned! Be sure to subscribe to the SGM listserv to receive any relevant announcements.
June 19, 2019: NIH Workplace Climate and Harassment Survey Interim Report
On June 12, NIH released the interim results of the NIH Workplace Climate and Harassment Survey, which was administered earlier this year to NIH employees, contractors, fellows, and trainees. This preliminary analysis of the survey yielded some concerning results, especially when examining data on sexual and gender minorities.
According to the analysis, over the previous 12 months 28.6 percent of gay and lesbian respondents and 41.2 percent of bisexual respondents indicated having experienced some form sexual harassment, which was notably higher than the 20.2% reported among heterosexual respondents. Of the individuals who identified as either transgender, genderqueer, questioning, or other, an alarming 44.8% indicated having experienced some form of sexual harassment, which was substantially higher when compared to cis-gender respondents.
These findings echo research findings that sexual and gender minority populations are more vulnerable to experiencing prejudice, discrimination, and sexual harassment. It also highlights the work that remains at NIH in ensuring that all employees, regardless of sexual orientation and gender identity, experience a work environment free of harassment. This interim report provides a preliminary analysis, and the data need to be further analyzed to better understand the factors that contribute to harassment at the NIH and to refine policies and take additional steps based on these secondary analyses.
Moving forward, the Sexual & Gender Minority Research Office will work alongside NIH leadership in advocating for our sexual and gender minority colleagues, as well us discussing future directions to help eliminate sexual harassment across not only these communities, but the entire agency.
June 3, 2019: Celebrating Pride Month at NIH
June marks the beginning of Pride Month, which not only commemorates the Stonewall Riots of 1969, but also celebrates sexual and gender diversity across the nation. It is a time to reflect on and recognize the immense hardships and obstacles sexual and gender minority (SGM) communities have overcome, and those that they continue to face today. While we celebrate the progress made thus far, we understand that much work still needs to be done, especially when it comes to achieving optimal health outcomes within SGM communities.
The Sexual & Gender Minority Research Office (SGMRO) at the National Institutes of Health (NIH) recognizes the significant health disparities that continue to exist within SGM populations and remains committed to ensuring that these populations are included and represented in research across the NIH. In honor of Pride Month, I am proud to announce that the SGMRO will be releasing its FY 2018 Annual Report and FY 2017 Portfolio Analysis in the coming weeks, which will highlight progress made at the NIH in coordinating and promoting SGM health research and related activities.
I am also proud to say that the SGMRO is leading implementation of recommendations made by the NIH Sexual & Gender Minority Research Working Group of the Council of Councils, following a mid-course progress review for the FY 2016-FY 2020 Strategic Plan to Advance Health Research on the Health and Well-being of Sexual and Gender Minorities. In order to meet one of these recommendations, the SGMRO recently brought onboard three new staff members to assist with strategic planning, programmatic management, and communications. These individuals bring with them an array of experiences which will indubitably help the SGMRO in addressing the rest of the Working Group’s recommendations, allowing the NIH to continue to expand efforts across the agency.
Here at the SGMRO, and the NIH, we remain deeply committed to the principles of equity, diversity, and inclusion in our research and our workplace. We understand that in order to best embody our agency’s mission of turning discovery into health, we must continue to be inclusive of all communities in our research and all related activities, regardless of sex, sexual orientation, and gender identity. It is my hope that during Pride month, all of us take a moment to celebrate the broad diversity of SGM communities and recognize the work that remains in understanding and reducing health disparities within these communities.
From the SGMRO to you, Happy Pride month!